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Background: Living donor kidney transplantation is the optimal treatment for end-stage kidney disease; however, few living donor candidates (LDCs) who begin evaluation actually donate. While some LDCs are deemed medically ineligible, others discontinue for potentially modifiable reasons., Methods: At five transplant centers, we conducted a prospective cohort study measuring LDCs' clinical and psychosocial characteristics, educational preparation, readiness to donate, and social determinants of health. We followed LDCs for 12 months after evaluation to determine whether they donated a kidney, opted to discontinue, had modifiable reasons for discontinuing, were medically ineligible, or had other recipient-related reasons for discontinuing., Results: Among 2184 LDCs, 18.6% donated, 38.2% opted to or had modifiable reasons for discontinuing, and 43.2% were deemed ineligible due to medical or recipient-related reasons. Multivariable analyses comparing successful LDCs with those who did not complete donation for modifiable reasons (N = 1241) found that LDCs who discussed donation with the recipient before evaluation (OR, 2.31; 95% CI, 1.54-3.46), had completed high school (OR, 2.01; 95% CI, 1.21-3.35), or were a "close relation" to their recipient (OR, 1.89; 95% CI, 1.33-2.69) were more likely to donate. Conversely, LDCs who reported religion as important (OR, 0.55; 95% CI, 0.38-0.80), were Non-White (OR, 0.70; 95% CI, 0.49-1.00), or had overall higher anxiety scores (OR, 0.92; 95% CI, 0.86-0.99) were less likely to donate., Conclusion: With fewer than a fifth of LDCs donating, developing programs to provide greater emotional support and facilitate open discussions between LDCs and recipients earlier may increase living donation rates., (© 2024 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Background: Pediatric (age < 18 years) kidney transplant (KT) candidates face increasingly complex choices. The 2014 kidney allocation system nearly doubled wait times for pediatric recipients. Given longer wait times and new ways to optimize compatibility, more pediatric candidates may consider kidney-paired donation (KPD). Motivated by this shift and the potential impact of innovations in KPD practice, we studied pediatric KPD procedures in the US from 2008 to 2021., Methods: We describe the characteristics and outcomes of pediatric KPD recipients with comparison to pediatric non-KPD living donor kidney transplants (LDKT), pediatric LDKT recipients, and pediatric deceased donor (DDKT) recipients., Results: Our study cohort includes 4987 pediatric DDKTs, 3447 pediatric non-KPD LDKTs, and 258 pediatric KPD transplants. Fewer centers conducted at least one pediatric KPD procedure compared to those that conducted at least one pediatric LDKT or DDKT procedure (67, 136, and 155 centers, respectively). Five centers performed 31% of the pediatric KPD transplants. After adjustment, there were no differences in graft failure or mortality comparing KPD recipients to non-KPD LDKT, LDKT, or DDKT recipients., Discussion: We did not observe differences in transplant outcomes comparing pediatric KPD recipients to controls. Considering these results, KPD may be underutilized for pediatric recipients. Pediatric KT centers should consider including KPD in KT candidate education. Further research will be necessary to develop tools that could aid clinicians and families considering the time horizon for future KT procedures, candidate disease and histocompatibility characteristics, and other factors including logistics and donor protections., (© 2023 The Authors. Pediatric Transplantation published by Wiley Periodicals LLC.)

Kidney paired donation (KPD) is a major innovation that is changing the landscape of kidney transplantation in the United States. We used the 2006-2021 United Network for Organ Sharing data to examine trends over time. KPD is increasing, with 1 in 5 living donor kidney transplants (LDKTs) in 2021 facilitated by KPD. The proportion of LDKT performed via KPD was comparable for non-Whites and Whites. An increasing proportion of KPD transplants are going to non-Whites. End-chain recipients are not identified in the database. To what extent these trends reflect how end-chain kidneys are allocated, as opposed to increase in living donation among minorities, remains unclear. Half the LDKT in 2021 in sensitized (panel reactive antibody ≥ 80%) and highly sensitized (panel reactive antibody ≥ 98%) groups occurred via KPD. Yet, the proportion of KPD transplants performed in sensitized recipients has declined since 2013, likely due to changes in the deceased donor allocation policies and newer KPD strategies such as compatible KPD. In 2021, 40% of the programs reported not performing any KPD transplants. Our study highlights the need for understanding barriers to pursuing and expanding KPD at the center level and the need for more detailed and accurate data collection at the national level., (Copyright © 2023 American Society of Transplantation & American Society of Transplant Surgeons. Published by Elsevier Inc. All rights reserved.)

Importance: Patients with advanced chronic kidney disease (CKD) have the best chance for a longer and healthier life if they receive a kidney transplant. However, many barriers prevent patients from receiving a transplant., Objectives: To evaluate the effect of a multicomponent intervention designed to target several barriers that prevent eligible patients from completing key steps toward receiving a kidney transplant., Design, Setting, and Participants: This pragmatic, 2-arm, parallel-group, open-label, registry-based, superiority, cluster randomized clinical trial included all 26 CKD programs in Ontario, Canada, from November 1, 2017, to December 31, 2021. These programs provide care for patients with advanced CKD (patients approaching the need for dialysis or receiving maintenance dialysis)., Interventions: Using stratified, covariate-constrained randomization, allocation of the CKD programs at a 1:1 ratio was used to compare the multicomponent intervention vs usual care for 4.2 years. The intervention had 4 main components, (1) administrative support to establish local quality improvement teams; (2) transplant educational resources; (3) an initiative for transplant recipients and living donors to share stories and experiences; and (4) program-level performance reports and oversight by administrative leaders., Main Outcomes and Measures: The primary outcome was the rate of steps completed toward receiving a kidney transplant. Each patient could complete up to 4 steps: step 1, referred to a transplant center for evaluation; step 2, had a potential living donor contact a transplant center for evaluation; step 3, added to the deceased donor waitlist; and step 4, received a transplant from a living or deceased donor., Results: The 26 CKD programs (13 intervention, 13 usual care) during the trial period included 20 375 potentially transplant-eligible patients with advanced CKD (intervention group [n = 9780 patients], usual-care group [n = 10 595 patients]). Despite evidence of intervention uptake, the step completion rate did not significantly differ between the intervention vs usual-care groups: 5334 vs 5638 steps; 24.8 vs 24.1 steps per 100 patient-years; adjusted hazard ratio, 1.00 (95% CI, 0.87-1.15)., Conclusions and Relevance: This novel multicomponent intervention did not significantly increase the rate of completed steps toward receiving a kidney transplant. Improving access to transplantation remains a global priority that requires substantial effort., Trial Registration: ClinicalTrials.gov Identifier: NCT03329521.

This retrospective review of the largest United States kidney exchange reports characteristics, utilization, and recipient outcomes of kidneys with simple compared to complex anatomy and extrapolates reluctance to accept these kidneys. Of 3105 transplants performed, only 12.8% were right kidneys and 23.1% had multiple renal arteries. 59.3% of centers used fewer right kidneys than expected and 12.1% transplanted zero right kidneys or kidneys with more than 1 artery. Five centers transplanted a third of these kidneys (35.8% of right kidneys and 36.7% of kidneys with multiple renal arteries). 22.5% and 25.5% of centers currently will not entertain a match offer for a left or right kidney with more than one artery, respectively. There were no significant differences in all-cause graft failure or death-censored graft loss for kidneys with multiple arteries, and a very small increased risk of graft failure for right kidneys versus left of limited clinical relevance for most recipients. Kidneys with complex anatomy can be used with excellent outcomes at many centers. Variation in use (lack of demand) for these kidneys reduces the number of transplants, so systems to facilitate use could increase demand. We cannot know how many donors are turned away because perceived demand is limited., (© 2022 The Authors. American Journal of Transplantation published by Wiley Periodicals LLC on behalf of The American Society of Transplantation and the American Society of Transplant Surgeons.)

Background and Objectives: Many individuals with kidney disease, particularly those belonging to racial and ethnic minority groups and whose primary language is not English, lack knowledge related to kidney disease symptoms, physiologic functions of the kidney, and benefits and risks of kidney transplantation. Valid instruments to assess patients' knowledge of CKD and kidney transplantation are needed., Design, Setting, Participants, & Measurements: Using a sample of 977 patients with stages 3-5 CKD in the Kaiser Permanente health system, we developed the Knowledge Assessment of Renal Transplantation (KART) 2.0 instrument. We conducted cognitive interviews followed by item response theory (IRT) to reduce 48 candidate items. Construct validity was tested by examining differences in scores between patients who spent <1 and ≥1 hour receiving CKD and transplant education., Results: Cognitive interviews modified four items and omitted 11. IRT analyses resulted in two scales: the KART 2.0-Transplant Knowledge Scale (16 items; Cronbach's α =0.8) and the KART 2.0-CKD Knowledge Scale (nine items; Cronbach's α =0.79). Differential item functioning showed that the scales were unbiased to capture knowledge across self-identified race, primary language, CKD stage, and sex. Both scales distinguished patients who had spent <1 and ≥1 hour speaking with health professionals (effect size [ES]=0.33 [transplant], 0.54 [CKD]; P <0.001 for both), reading about kidney disease (ES=0.45 [transplant], 0.62 [CKD]; P <0.001), reading about kidney transplantation (ES=0.67 [transplant], 0.69 [CKD]; P <0.001), and reading about living donor kidney transplant (ES=0.76 [transplant], 0.62 [CKD]; P <0.001)., Conclusions: The KART 2.0 is a valid tool to assess patients' knowledge of CKD and kidney transplantation., (Copyright © 2022 by the American Society of Nephrology.)

Introduction: Timely access to kidney transplant is essential to reducing mortality of children with kidney disease. We examined factors affecting providers' decisions to delay waitlisting, compared perceptions of important factors of providers to families, when delaying activation, and describe recommendations to improve support for pediatric patients and families to overcome waitlisting delays., Methods: Using a mixed-methods design, 20 providers and 20 families of pediatric patients with kidney disease, participated in interviews and surveys. Interviews were analyzed using thematic analysis. Surveys were analyzed with descriptive statistics., Results: Avoiding retransplantation, treatment nonadherence, poor psychological readiness for transplant, poor physical health, and greater need for social support were the key themes affecting providers' decisions to delay waitlisting. At least 70% of both providers and families felt that waitlisting should be delayed until patients and families had reliable access to transportation, mental health support, and caregivers who can better understand medical information. At least 70% of families surveyed felt it was important to delay waitlisting until they had regulated blood pressure and well-managed labs. Ethical concerns emerge that waitlisting practices may contribute to disparities in access to transplant., Conclusion: Providers and families agree that stabilizing the family situation and improving adherence to treatment are important reasons to delay waitlisting. However, pediatric patients facing greater disparities need easier access to psychological services, strengthened social support, access to economic resources, and stronger relationships with coordinators. Addressing patient burdens is essential for reaching more equitable listing practices.

Introduction: Educating potential kidney patients and living donors about the risks and benefits of kidney paired donation to ensure they make informed decisions is complex. This study aimed to increase understanding of patients' and donors' decision-making about donation, the educational content they received, and their recommendations for educational improvements., Method: We conducted a mixed methods study, including semistructured interviews and quantitative surveys, with 43 participants (25 living donors; 18 kidney recipients)., Findings: Participants reported that the benefits of paired donation motivated them to participate (ie, helping multiple people, receiving a transplant sooner, flexible timing of donation). Although deciding to participate in paired donation was a systematic, logical, and carefully considered process for some. For most, it was a quickly made, often emotion-based decision. Paired donation educational content on different topics varied, with recipients reporting receiving less information than donors about donor protections and processes to ameliorate the challenges faced, such as broken swaps and chains, and delays in matching. Those who faced challenges requested more information about donor protections and support during and after paired donation. Although many acknowledged their transplant coordinators' helpfulness, participants also recommended being more proactive in learning about kidney paired donation and speaking to former donors and recipients beforehand., Discussion: Standardized, health literate educational content addressing the gaps and variability in education received may help increase paired donation informed decision-making.

Increasing numbers of compatible pairs are choosing to enter paired exchange programs, but motivations, outcomes, and system-level effects of participation are not well described. Using a linkage of the Scientific Registry of Transplant Recipients and National Kidney Registry, we compared outcomes of traditional (originally incompatible) recipients to originally compatible recipients using the Kaplan-Meier method. We identified 154 compatible pairs. Most pairs sought to improve HLA matching. Compared to the original donor, actual donors were younger (39 vs. 50 years, p < .001), less often female (52% vs. 68%, p < .01), higher BMI (27 vs. 25 kg/m², p = .03), less frequently blood type O (36% vs. 80%, p < .001), and had higher eGFR (99 vs. 94 ml/min/1.73 m², p = .02), with a better LKDPI (median 7 vs. 22, p < .001). We observed no differences in graft failure or mortality. Compatible pairs made 280 additional transplants possible, many in highly sensitized recipients with long wait times. Compatible pair recipients derived several benefits from paired exchange, including better donor quality. Living donor pairs should receive counseling regarding all options available, including kidney paired donation. As more compatible pairs choose to enter exchange programs, consideration should be given to optimizing compatible pair and hard-to-transplant recipient outcomes., (© 2021 The American Society of Transplantation and the American Society of Transplant Surgeons.)

Background: Since 2007, the National Living Donor Assistance Center has provided the most financial support to US living donors meeting specific income criteria by reimbursing travel, meal, and lodging expenses. In 2019, the National Kidney Registry started providing lost wages, travel, and lodging reimbursement via their Donor Shield program. Donor Shield is automatically provided to donors who participate in kidney paired donation through the National Kidney Registry or who donate at a Donor Shield Direct center, without any income restrictions., Methods: The support donors across the United States received from the Donor Shield program between January 2019 and February 2020 was studied., Results: During the study period, 326 (25.9%) of the 1260 donors covered by Donor Shield, from 46 programs received reimbursements amounting to a total of $647 384.45, with $472 389.97 (73.0%) covering lost wages. Median reimbursement per donor was $1813.80 (range, $44.0-$165.63). Eighty-one percent of 108 reimbursed donors who were surveyed reported that the lack of these reimbursements would have posed a financial hardship, and 4% said they would have been unable to donate without this support., Conclusions: Expansion of lost wages reimbursement programs to all donors in the United States would be an important step toward achieving financial neutrality for this unique population and could also help meet the growing demand for transplantable organs by increasing living donation rates., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Despite the institution of a new Kidney Allocation System in 2014, A2/A2B to B transplantation has not increased as expected. The current Organ Procurement and Transplantation Network policy requires subtyping on two separate occasions, and in the setting of discrepant results, defaulting to the A1 subtype. However, there is significant inherent variability in the serologic assays used for blood group subtyping and genotyping is rarely done., Methods: The National Kidney Registry, a kidney paired donation (KPD) program, performs serological typing on all A/AB donors, and in cases of non-A1/non-A1B donors, confirmatory genotyping is performed., Results: Between 2/18/2018 and 9/15/2020, 13.0% (145) of 1,111 type A donors registered with the NKR were ultimately subtyped as A2 via genotyping. Notably, 49.6% (72) of these were subtyped as A1 at their donor center, and in accordance with OPTN policy, ineligible for allocation as A2., Conclusion: Inaccurate A2 subtyping represents a significant lost opportunity in transplantation, especially in KPD where A2 donors can not only facilitate living donor transplantation for O and highly sensitized candidates, but can also facilitate additional living donor transplants. This study highlights the need for improved accuracy of subtyping technique, and the need for policy changes encouraging optimal utilization of A2 donor kidneys., (© 2021 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Individually tailoring education over time may help more patients, especially racial/ethnic minorities, get waitlisted and pursue deceased and living donor kidney transplant (DDKT and LDKT, respectively). We enrolled 802 patients pursuing transplant evaluation at the University of California, Los Angeles Transplant Program into a randomized education trial. We compared the effectiveness of Your Path to Transplant (YPT), an individually tailored coaching and education program delivered at 4 time points, with standard of care (SOC) education on improving readiness to pursue DDKT and LDKT, transplant knowledge, taking 15 small transplant-related actions, and pursuing transplant (waitlisting or LDKT rates) over 8 months. Survey outcomes were collected prior to evaluation and at 4 and 8 months. Time to waitlisting or LDKT was assessed with at least 18 months of follow-up. At 8 months, compared to SOC, the YPT group demonstrated increased LDKT readiness (47% vs 33%, P = .003) and transplant knowledge (effect size [ES] = 0.41, P < .001). Transplant pursuit was higher in the YPT group (hazard ratio: 1.44, 95% confidence interval: 1.15-1.79, P = .002). A focused, coordinated education effort can improve transplant-seeking behaviors and waitlisting rates. ClinicalTrials.gov registration: NCT02181114., (© 2020 The American Society of Transplantation and the American Society of Transplant Surgeons.)

The National Kidney Registry (NKR) Advanced Donation Program enables living donors the opportunity to donate altruistically, or in advance of a potential recipient's transplant, and to receive a voucher that can be redeemed for a future transplant facilitated by the NKR. Family vouchers allow a donor to identify multiple individuals within their immediate family, with the first person in that group in need of a transplant being prioritized to receive a kidney. An increase in vouchers introduces concerns that demand for future voucher redemptions could exceed the supply of available donors and kidneys. A Monte Carlo simulation model was constructed to estimate the annual number of voucher redemptions relative to the number of kidneys available over a 50-year time horizon under several projected scenarios for growth of the program. In all simulated scenarios, the number of available kidneys exceeded voucher redemptions every year. While not able to account for all real-life scenarios, this simulation study found that the NKR should be able to satisfy the likely redemption of increasing numbers of vouchers under a range of possible scenarios over a 50-year time horizon. This modeling exercise suggests that a donor family's future needs can be satisfied through the voucher program., (© 2020 The Authors. American Journal of Transplantation published by Wiley Periodicals LLC on behalf of The American Society of Transplantation and the American Society of Transplant Surgeons.)

Introduction: The recent increase in non-directed donors (NDDs) in the United States (U.S.) may help reduce the overwhelming number of patients on the waitlist. However, non-directed donation may be limiting its full potential. Out-of-pocket donation costs upward of $8,000 may be a barrier to potential donors with altruistic tendencies, but inadequate financial support. This study aimed to describe the financial concerns of 31 U.S. NDDs., Methods: We conducted qualitative interviews and administered quantitative demographic surveys between April 2013 and April 2015. Interview transcripts were analyzed using grounded theory techniques to describe and expand on themes relevant to the NDD experience., Findings: We identified 4 sub-themes related to the theme of financial concerns: (1) direct costs related to transportation, lodging, and parking, (2) indirect costs of lost wages encountered from taking time off work to recover from surgery, (3) sources of financial support, and (4) suggestions for alleviating donor financial burden. Two thirds of participants (20) expressed concerns about direct and indirect donation costs. 11 NDDs reported the negative impact of direct costs,15 NDDs had concerns about indirect costs; only 7 donors received supplemental financial support from state mandates and transplant programs., Discussion: Understanding the financial concerns of NDDs may guide improvements in the NDD donation experience that could support individuals who are interested in donating but lack the financial stability to donate. Removing financial disincentives may help increase nondirected donation rates, increase the living donor pool, and the number of kidneys available for transplantation.

Background: Policy changes including the Advancing American Kidney Health initiative and CMS's ESRD Quality Incentive Program recommend increasing educational initiatives within dialysis centers to increase living kidney donor transplant (LDKT) rates. LDKT education can be challenging in dialysis centers due to limited provider time to educate, patient fears or reluctance to learn about LDKT, and difficulty educating potential living donors. New educational innovations that increase dialysis patient curiosity about pursuing LDKT are needed., Summary: Digital first-person storytelling, or the sharing of narratives by individuals in their own words, is a culturally competent, health literate, patient-driven approach to expanding patient understanding about LDKT that can supplement traditional educational strategies without additional burden for dialysis providers. The Living Donation Storytelling Project is an online digital library of over 150 video stories told by diverse kidney recipients, donors, those in search of a donor, and their family/friends. By honestly discussing how they overcame fears and challenges related to LDKT, these stories address sensitive topics that can be hard for providers to introduce by using easily accessible learning methodology that may better connect with racial/ethnic minorities, scared patients, and patients facing health literacy challenges. Key Messages: Supplementing traditional educational approaches with digital storytelling may help overcome time limitations in educating for busy providers, boost providers' own knowledge about LDKT, serve as a free supplemental resource for patients, reduce fears and increase self-efficacy about transplant, help more patients to share about transplant with their social networks, and ultimately increase LDKT rates., (© 2021 S. Karger AG, Basel.)

Context: Early tailored transplant education could help patients make informed transplant choices., Objective: We interviewed 40 patients with chronic kidney disease (CKD) stages 3 to 5, 13 support persons, and 10 providers at Kaiser Permanente Southern California to understand: (1) barriers to transplant education and (2) transplant educational preferences and recommendations based on CKD stage and primary language spoken., Design: A grounded theory analysis identified central themes related to transplant education barriers, preferences, and recommendations., Results: Barriers included confusion about diagnosis and when transplant may be necessary, concerns about transplant risks, families' lack of transplant knowledge, financial burdens, transportation and scheduling, and the emotional overload of chronic illness. Hispanic and Spanish-speaking participants reported difficulty in understanding transplant education and medical mistrust. Recommendations included providing general education, earlier introduction to transplant, wait-listing information, transplant education for support persons, living donation education for patients and potential donors, opportunities to meet living donors and kidney recipients, information on the benefits of transplant, recovery, and available financial resources, flexible class scheduling, online and print resources, and more provider follow-up. Spanish-speaking and Hispanic participants recommended using bilingual educators, print, video, and online resources in Spanish, and culturally responsive education. Patients with CKD stages 3 to 4 wanted information on slowing disease progression and avoiding transplant., Conclusion: Increasing access to culturally responsive transplant education in multiple languages, pairing appropriate content to the disease stage, and increasing system-wide follow-up as the disease progresses might help patients make more informed choices about transplant.

Background and Objectives: In the United States, kidney paired donation networks have facilitated an increasing proportion of kidney transplants annually, but transplant outcome differences beyond 5 years between paired donation and other living donor kidney transplant recipients have not been well described., Design, Setting, Participants, & Measurements: Using registry-linked data, we compared National Kidney Registry ( n =2363) recipients to control kidney transplant recipients ( n =54,497) (February 2008 to December 2017). We estimated the risk of death-censored graft failure and mortality using inverse probability of treatment weighted Cox regression. The parsimonious model adjusted for recipient factors (age, sex, black, race, body mass index ≥30 kg/m 2 , diabetes, previous transplant, preemptive transplant, public insurance, hepatitis C, eGFR, antibody depleting induction therapy, year of transplant), donor factors (age, sex, Hispanic ethnicity, body mass index ≥30 kg/m 2 ), and transplant factors (zero HLA mismatch)., Results: National Kidney Registry recipients were more likely to be women, black, older, on public insurance, have panel reactive antibodies >80%, spend longer on dialysis, and be previous transplant recipients. National Kidney Registry recipients were followed for a median 3.7 years (interquartile range, 2.1-5.6; maximum 10.9 years). National Kidney Registry recipients had similar graft failure (5% versus 6%; log-rank P =0.2) and mortality (9% versus 10%; log-rank P =0.4) incidence compared with controls during follow-up. After adjustment for donor, recipient, and transplant factors, there no detectable difference in graft failure (adjusted hazard ratio, 0.95; 95% confidence interval, 0.77 to 1.18; P =0.6) or mortality (adjusted hazard ratio, 0.86; 95% confidence interval, 0.70 to 1.07; P =0.2) between National Kidney Registry and control recipients., Conclusions: Even after transplanting patients with greater risk factors for worse post-transplant outcomes, nationalized paired donation results in equivalent outcomes when compared with control living donor kidney transplant recipients., (Copyright © 2020 by the American Society of Nephrology.)

Background: Transplant education in dialysis centers can increase access to kidney transplant; however, dialysis center transplant barriers are common, and limited research identifies the most effective transplant education approaches., Methods: We surveyed transplant educators in 1694 US dialysis centers about their transplant knowledge, use of 12 education practices, and 8 identified education barriers. Transplant wait-listing rates were calculated using US Renal Data System data., Results: Fifty-two percent of educators orally recommended transplant to patients, 31% had in-center transplant discussions with patients, 17% distributed print educational resources, and 3% used intensive education approaches. Distribution of print education (incident rate ratio: 1.021.151.30) and using >1 intensive education practice (1.001.111.23) within dialysis centers were associated with increased wait-listing rates. Several dialysis center characteristics were associated with reduced odds of using education strategies leading to increased wait-listing. Centers with greater percentages of uninsured patients (odds ratio [OR]: 0.960.970.99), in rural locations (OR: 0.660.790.95), with for-profit ownership (OR: 0.640.770.91), and with more patients older than 65 years (OR: 0.050.110.23) had lower odds of recommending transplant, while centers with a higher patient-to-staff ratio were more likely to do so (OR: 1.011.031.04). Language barriers (OR: 0.480.640.86) and having competing work priorities (OR: 0.400.530.70) reduced the odds of distributing print education. Providers with greater transplant knowledge were more likely to use >1 intensive educational strategy (OR: 1.011.271.60) while providers who reported competing work priorities (OR: 0.510.660.84) and poor communication with transplant centers (OR: 0.580.760.98) were less likely to do so., Conclusions: Educators should prioritize transplant education strategies shown to be associated with increasing wait-listing rates.

Rationale & Objective: Compared with others, black and low-income patients receiving dialysis are less likely to receive kidney transplantation (KT) education within dialysis centers. We examined the efficacy of 2 supplementary KT education approaches delivered directly to patients., Study Design: Prospective, 3-arm parallel-group, randomized, controlled trial., Settings & Participants: Adult, black, and white low-income patients receiving dialysis in Missouri., Intervention: Patients were randomly assigned to 1 of 3 educational conditions: (1) standard of care, usual KT education provided in dialysis centers (control); (2) Explore Transplant @ Home patient-guided, 4 modules of KT education sent directly to patients using print, video, and text messages; and (3) Explore Transplant @ Home educator-guided, the patient-guided intervention plus 4 telephonic discussions with an educator., Outcomes: Primary: patient knowledge of living (LDKT) and deceased donor KT (DDKT). Secondary: informed decision making, change in attitudes in favor of LDKT and DDKT, and change in the number of new steps taken toward KT., Results: In intent-to-treat analyses, patients randomly assigned to educator- and patient-guided interventions had greater knowledge gains (1.4 point increase) than control patients (0.8 point increase; P=0.02 and P=0.01, respectively). Compared with control patients, more patients randomly assigned to educator- and patient-guided interventions were able to make informed decisions about starting KT evaluation (82% vs 91% and 95%; P=0.003), pursuing DDKT (70% vs 84% and 84%; P=0.003), and pursuing LDKT (73% vs 91% and 92%; P<0.001)., Limitations: Potential contamination because of patient-level randomization; no assessment of clinical end points., Conclusions: Education presented directly to dialysis patients, with or without coaching by telephone, increased dialysis patients' KT knowledge and informed decision making without increasing educational burden on providers., Funding Source: This project was funded by the National Institutes of Health and Health Resources and Services Administration., Trial Registration: Registered at ClinicalTrials.gov with study number NCT02268682., (Copyright © 2019 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Patients from ethnocultural minorities have reduced access to live donor kidney transplant (LDKT). To explore early pretransplant ethnocultural disparities in LDKT readiness, and the impact of the interactions with the transplant program, we assessed if patients had a potential live donor (LD) identified at first pretransplant assessment, and if patients with no LD initially received LDKT subsequently. Single-center, retrospective cohort of adults referred for kidney transplant (KT) assessment. Multivariable logistic regression assessed the association between ethnicity and having a potential LD. Cox proportional hazard analysis assessed the association between no potential LD initially and subsequent LDKT. Of 1617 participants, 66% of Caucasians indicated having a potential LD, compared with 55% of South Asians, 44% of African Canadians, and 41% of East Asians (P < 0.001). In multivariable logistic regression analysis, the odds of having a potential LD identified was significantly lower for African, East and South Asian Canadians. No potential LD at initial KT assessment was associated with lower likelihood of LDKT subsequently (hazard ratio [HR], 0.14; [0.10-0.19]). Compared to Caucasians, African, East and South Asian and African Canadians are less likely to have a potential LD identified at first KT assessment, which predicts a lower likelihood of subsequent LDKT., (© 2019 Steunstichting ESOT.)

Background: Five-year survival on dialysis is only 40%, compared to 74% with a deceased donor kidney transplant (DDKT) and 87% with a living donor kidney transplant (LDKT). An American Society of Transplantation (AST) Consensus Conference recommended that patients with chronic kidney disease (CKD) Stages 3-5 have the opportunity to learn about and decide which treatment option is right for them, particularly about LDKT. However, early education about LDKT and DDKT outside of transplant centers is inconsistent and often poor, with patients in CKD 3 and 4 and ethnic/racial minorities even less likely to receive it. A new randomized control trial (RCT), in partnership with Kaiser Permanente Southern California (KPSC), will assess knowledge gaps and the effectiveness of a supplementary video-guided, print and technology-based education intervention for English- and Spanish-speaking patients in CKD Stages 3, 4, and 5 to increase LDKT knowledge and decision-making. To date, no published LDKT educational interventions have studied such a large and diverse CKD population., Methods: In this RCT, 1200 English and Spanish-speaking CKD Stage 3-5 patients will be randomly assigned to one of two education conditions: ET@Home or KPSC standard of care education. Randomization will be stratified by CKD stage and primary language spoken. Those in the ET@Home condition will receive brochures, postcards, DVDs, and text messages delivering educational content in modules over a six-month period. Baseline data collection will measure demographics, transplant derailers, and the amount of previous CKD and transplant education they have received. Changes in CKD and transplant knowledge, ability to make an informed decision about transplant, and self-efficacy to pursue LDKT will be captured with surveys administered at baseline and at six months., Discussion: At the conclusion of the study, investigators will understand key knowledge gaps for patients along the CKD continuum and between patients who speak different languages and have assessed the effectiveness of both English- and Spanish-language supplementary education in increasing KPSC patients' knowledge about the opportunities for and risks and benefits of LDKT. We hope this program will reduce disparities in access to transplant., Trial Registration: ClinicalTrials.gov Identifier: NCT03389932; date registered: 12/26/2017.

Background: Kidney transplant is the best treatment for most end-stage renal disease (ESRD) patients, but proportionally few ESRD patients receive kidney transplant. To make an informed choice about whether to pursue kidney transplant, patients must be knowledgeable of its risks and benefits. To reliably and validly measure ESRD patients' kidney transplant knowledge, rigorously tested measures are required. This article describes the development and psychometric testing of the Knowledge Assessment of Renal Transplantation (KART)., Methods: We administered 17 transplant knowledge items to a sample of 1294 ESRD patients. Item characteristics and scale scores were estimated using an Item Response Theory graded response model. Construct validity was tested by examining differences in scale scores between patients who had spent less than 1 and 1 hour or longer receiving various types of transplant education., Results: Item Response Theory modeling suggested that 15 items should be retained for the KART. This scale had a marginal reliability of 0.75 and evidenced acceptable reliability (>0.70) across most of its range. Construct validity was supported by the KART's ability to distinguish patients who had spent less than 1 and 1 hour or longer receiving different types of kidney transplant education, including talking to doctors/medical staff (effect size [ES], 0.61; P < 0.001), reading brochures (ES, 0.45; P < 0.001), browsing the internet (ES, 0.56; P < 0.001), and watching videos (ES, 0.56; P < 0.001)., Conclusions: The final 15-item KART can be used to determine the kidney transplant knowledge levels of ESRD patients and plan appropriate interventions to ensure informed transplant decision making occurs.

The practice of kidney paired donation (KPD) is expanding annually, offering the opportunity for live donor kidney transplant to more patients. We sought to identify if voluntary KPD networks such as the National Kidney Registry (NKR) were selecting or attracting a narrower group of donors or recipients compared with national registries. For this purpose, we merged data from the NKR database with the Scientific Registry of Transplant Recipients (SRTR) database, from February 14, 2008, to February 14, 2017, encompassing the first 9 years of the NKR. Compared with all United Network for Organ Sharing (UNOS) live donor transplant patients (49 610), all UNOS living unrelated transplant patients (23 319), and all other KPD transplant patients (4236), the demographic and clinical characteristics of NKR transplant patients (2037) appear similar to contemporary national trends. In particular, among the NKR patients, there were a significantly (P < .001) greater number of retransplants (25.6% vs 11.5%), hyperimmunized recipients (22.7% vs 4.3% were cPRA >80%), female recipients (45.9% vs 37.6%), black recipients (18.2% vs 13%), and those on public insurance (49.7% vs 41.8%) compared with controls. These results support the need for greater sharing and larger pool sizes, perhaps enhanced by the entry of compatible pairs and even chains initiated by deceased donors, to unlock more opportunities for those harder-to-match pairs., (© 2018 The American Society of Transplantation and the American Society of Transplant Surgeons.)

One criticism of kidney paired donation (KPD) is that easy-to-match candidates leave the registry quickly, thus concentrating the pool with hard-to-match sensitized and blood type O candidates. We studied candidate/donor pairs who registered with the National Kidney Registry (NKR), the largest US KPD clearinghouse, from January 2012-June 2016. There were no changes in age, gender, BMI, race, ABO blood type, or panel-reactive antibody (PRA) of newly registering candidates over time, with consistent registration of hard-to-match candidates (59% type O and 38% PRA ≥97%). However, there was no accumulation of type O candidates over time, presumably due to increasing numbers of nondirected type O donors. Although there was an initial accumulation of candidates with PRA ≥97% (from 33% of the pool in 2012% to 43% in 2014, P = .03), the proportion decreased to 17% by June 2016 (P < .001). Some of this is explained by an increase in the proportion of candidates with PRA ≥97% who underwent a deceased donor kidney transplantation (DDKT) after the implementation of the Kidney Allocation System (KAS), from 8% of 2012 registrants to 17% of 2015 registrants (P = .02). In this large KPD clearinghouse, increasing participation of nondirected donors and the KAS have lessened the accumulation of hard-to-match candidates, but highly sensitized candidates remain hard-to-match., (© 2018 The American Society of Transplantation and the American Society of Transplant Surgeons.)

Introduction: Dialysis centers must provide transplant education to patients but often do not address the risks and benefits of living and deceased donor transplant., Research Questions: In a group randomized controlled trial of 20 dialysis centers and 253 patients, we assessed whether the Explore Transplant education program increased patients' readiness to pursue transplant, transplant knowledge, informed transplant decision-making, discussions about transplant with potential living donors, pursuit and receipt of living or deceased donor transplant, and whether these effects varied by race., Methods: Patients at participating dialysis centers were randomized to receive either (1) a 4-module Explore Transplant education program, including videos, printed materials, and transplant educator discussions or (2) standard-of-care transplant education provided by dialysis centers. The trial had 3 phases: (1) pre- and postsurveying and dialysis center education (2007-2008), (2) follow-up to determine whether patients restarted or began transplant evaluation (2008-2010), and (3) assessment of participants' receipt of a renal transplant (2012-2015)., Results: Compared to patients in standard-of-care dialysis centers, patients who received the intervention were more likely to increase in their stage of readiness for living donor transplantation (odds ratio: 2.50; 95% confidence interval: 1.10-5.66), had greater increases in their transplant knowledge ( P < .001), and were more likely to call to restart/begin transplant evaluation (38% vs 24%, P = .006). When analyses were stratified by race, black patients were more likely to take several steps toward transplant in comparison to whites., Discussion: The Explore Transplant helps dialysis patients make informed decisions and increases their pursuit of transplant, particularly among black patients.

Kidney paired donation (KPD) can facilitate living donor transplantation for candidates with an incompatible donor, but requires waiting for a match while experiencing the morbidity of dialysis. The balance between waiting for KPD vs desensitization or deceased donor transplantation relies on the ability to estimate KPD wait times. We studied donor/candidate pairs in the National Kidney Registry (NKR), a large multicenter KPD clearinghouse, between October 2011 and September 2015 using a competing-risk framework. Among 1894 candidates, 52% were male, median age was 50 years, 66% were white, 59% had blood type O, 42% had panel reactive antibody (PRA)>80, and 50% obtained KPD through NKR. Median times to KPD ranged from 2 months for candidates with ABO-A and PRA 0, to over a year for candidates with ABO-O or PRA 98+. Candidates with PRA 80-97 and 98+ were 23% (95% confidence interval , 6%-37%) and 83% (78%-87%) less likely to be matched than PRA 0 candidates. ABO-O candidates were 67% (61%-73%) less likely to be matched than ABO-A candidates. Candidates with ABO-B or ABO-O donors were 31% (10%-56%) and 118% (82%-162%) more likely to match than those with ABO-A donors. Providers should counsel candidates about realistic, individualized expectations for KPD, especially in the context of their alternative treatment options., (© 2018 The American Society of Transplantation and the American Society of Transplant Surgeons.)

Aims and Objectives: To describe the spirituality and religiosity of 30 non-directed (altruistic) living kidney donors in the USA and explore how they may have affected their motivations to donate and donation process experiences., Background: The rise in non-directed donors and their ability to initiate kidney chains offer a novel approach to help alleviate the overextended kidney transplant wait list in the USA. However, little is known about the non-directed donors' motivations, characteristics and experiences., Design: We conducted a qualitative-dominant study and used a grounded theory approach to analyse data., Methods: Thirty participants completed in-depth interviews between April 2013-April 2015. Three analysts independently read and coded interview transcripts. Grounded theory techniques were used to develop descriptive categories and identify topics related to the non-directed donors donation experience., Results: Sixteen of the 30 non-directed donorss discussed the topic of spirituality and religiosity when describing their donation experiences, regardless of whether they were actively practising a religion at the time of donation. Specifically, three themes were identified within spirituality and religiosity: motivation to donate, support in the process, and justification of their donation decisions postdonation., Conclusions: Findings from this study are the first to describe how spirituality and religiosity influenced the experiences of U.S. non-directed donorss and may help improve non-directed donors educational resources for future spiritual or religious non-directed donors, and the overall non-directed donors donation experience in efforts to increase the living donor pool., Relevance to Clinical Practice: Spirituality and religiosity are often overlooked yet potentially influential factors in Western medicine, as demonstrated through the experiences of Jehovah's Witnesses and their religious restrictions while undergoing surgery and the beliefs of Christian Scientists against taking medications and receiving medical procedures. Understanding needs of non-directed donors specifically with spirituality and religiosity can better position kidney transplant centres and teams to improve predonation screening of non-directed donor candidates and provide support services during the donation process., (© 2017 John Wiley & Sons Ltd.)

Introduction: Maximizing education about living donor kidney transplant (LDKT) during the in-person evaluation at the transplant center may increase the numbers of kidney patients pursuing LDKT. Research Questions and Design: To test the effectiveness of a 1-time LDKT educational intervention, we performed a cluster-randomized trial among 499 patients who presented for evaluation of kidney transplant. We compared usual care education (n = 250) versus intensive LDKT education (n = 249), which was implemented only on the evaluation day and consisted of viewing a 25-minute video of information and stories about LDKT and discussion of LDKT possibilities with an educator. Our primary outcome was knowledge of LDKT, 1 week after the transplant evaluation., Results: One week after evaluation, patients who received intensive education had higher knowledge than patients who received usual care (12.7 vs. 11.7; P = .0008), but there were no differences in postevaluation readiness for LDKT. Among patients who had not previously identified a potential living donor, receiving intensive education was associated with increased willingness to take steps toward LDKT., Discussion: In conclusion, expansion of LDKT education within the evaluation day may be helpful, but interventions that are implemented at multiple times and for greater duration may be necessary to ensure larger and long-term behavioral changes in pursuit of LDKT.

Patients considering renal transplantation face an increasingly complex array of choices as a result of the revised kidney transplant allocation system. Decision aids have been shown to improve patient decision-making through the provision of detailed, relevant, individualized clinical data. A mobile iOS-based application (app) including animated patient education and individualized risk-adjusted outcomes following kidney transplants with varying donor characteristics and DSA waiting times was piloted in two large US transplant programs with a diverse group of renal transplant candidates (N = 81). The majority (86%) of patients felt that the app improved their knowledge and was culturally appropriate for their race/ethnicity (67%-85%). Patients scored significantly higher on transplant knowledge testing (9.1/20 to 13.8/20, P < .001) after viewing the app, including patients with low health literacy (8.0 to 13.0, P < .001). Overall knowledge of and interest in living and deceased donor kidney transplantation increased. This pilot project confirmed the benefit and cultural acceptability of this educational tool, and further refinement will explore how to better communicate the risks and benefits of nonstandard donors., (© 2017 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Background: We examined if African or Asian ethnicity was associated with lower access to kidney transplantation (KT) in a Canadian setting., Methods: Patients referred for KT to the Toronto General Hospital from January 1, 2003, to December 31, 2012, who completed social work assessment, were included (n = 1769). The association between ethnicity and the time from referral to completion of KT evaluation or receipt of a KT were examined using Cox proportional hazards models., Results: About 54% of the sample was white, 13% African, 11% East Asian, and 11% South Asian; 7% had "other" (n = 121) ethnic background. African Canadians (hazard ratio [HR], 0.75; 95% CI: 0.62-0.92]) and patients with "other" ethnicity (HR, 0.71; 95% CI, 0.55-0.92) were less likely to complete the KT evaluation compared with white Canadians, and this association remained statistically significant in multivariable adjusted models. Access to KT was significantly reduced for all ethnic groups assessed compared with white Canadians, and this was primarily driven by differences in access to living donor KT. The adjusted HRs for living donor KT were 0.35 (95% CI, 0.24-0.51), 0.27 (95% CI, 0.17-0.41), 0.43 (95% CI, 0.30-0.61), and 0.34 (95% CI, 0.20-0.56) for African, East or South Asian Canadians and for patients with "other" ethnic background, respectively., Conclusions: Similar to other jurisdictions, nonwhite patients face barriers to accessing KT in Canada. This inequity is very substantial for living donor KT. Further research is needed to identify if these inequities are due to potentially modifiable barriers.

Background and Objectives: Waitlist inactivity is a barrier to transplantation, because inactive candidates cannot receive deceased donor organ offers. We hypothesized that temporarily inactive kidney transplant candidates living in linguistically isolated communities would be less likely to achieve active waitlist status., Design, Setting, Participants, & Measurements: We merged Organ Procurement and Transplantation Network/United Network for Organ Sharing data with five-digit zip code socioeconomic data from the 2000 US Census. The cumulative incidence of conversion to active waitlist status, death, and delisting before conversion among 84,783 temporarily inactive adult kidney candidates from 2004 to 2012 was determined using competing risks methods. Competing risks regression was performed to characterize the association between linguistic isolation, incomplete transplantation evaluation, and conversion to active status. A household was determined to be linguistically isolated if all members ≥14 years old speak a non-English language and also, speak English less than very well., Results: A total of 59,147 candidates (70% of the study population) achieved active status over the study period of 9.8 years. Median follow-up was 110 days (interquartile range, 42-276 days) for activated patients and 815 days (interquartile range, 361-1244 days) for candidates not activated. The cumulative incidence of activation over the study period was 74%, the cumulative incidence of death before conversion was 10%, and the cumulative incidence of delisting was 13%. After adjusting for other relevant covariates, living in a zip code with higher percentages of linguistically isolated households was associated with progressively lower subhazards of activation both in the overall population (reference: <1% linguistically isolated households; 1%-4.9% linguistically isolated: subhazard ratio, 0.89; 95% confidence interval, 0.86 to 0.93; 5%-9.9% linguistically isolated: subhazard ratio, 0.83; 95% confidence interval, 0.80 to 0.87; 10%-19.9% linguistically isolated: subhazard ratio, 0.76; 95% confidence interval, 0.72 to 0.80; and ≥20% linguistically isolated: subhazard ratio, 0.71; 95% confidence interval, 0.67 to 0.76) and among candidates designated temporarily inactive due to an incomplete transplant evaluation., Conclusions: Our findings indicate that candidates residing in linguistically isolated communities are less likely to complete candidate evaluations and achieve active waitlist status., (Copyright © 2017 by the American Society of Nephrology.)

Background: The persistent challenges of bridging healthcare disparities for African Americans (AAs) in need of kidney transplantation continue to be unresolved at the national level. This healthcare disparity is multifactorial: stemming from limited kidney donors suitable for AAs; inconsistent care coordination and suboptimal risk factor control; social determinants, low socioeconomic status, reduced access to care; and mistrust of clinicians and the healthcare system., Summary: There are numerous opportunities to significantly lessen the disparities in kidney transplantation for AAs through the following measures: the adoption of new care and patient engagement models that include education, enhanced practice-level cultural sensitivity, and timely referral as well as increased research on the impact of the environment on genetic risk, and implementation of new transplantation-related policies. Key Messages: This systematic review describes pretransplant concerns related to access to kidney transplantation, posttransplant complications, and policy interventions to address the challenging issues associated with kidney transplantation in AAs., (© 2017 S. Karger AG, Basel.)

Living donor kidney transplant is the ideal treatment option for end-stage renal disease; however, the decision to pursue living donor kidney transplant is complex and challenging. Measurement invariance of living donor kidney transplant Decisional Balance and Self-Efficacy across gender (male/female), race (Black/White), and education level (no college/college or higher) were examined using a sequential approach. Full strict invariance was found for Decisional Balance and Self-Efficacy for gender and partial strict invariance was found for Decisional Balance and Self-Efficacy across race and education level. This information will inform tailored feedback based on these constructs in future intervention studies targeting behavior change among specific demographic subgroups., (© The Author(s) 2015.)

Living donor kidney transplantation (LDKT) offers better quality of life and clinical outcomes, including patient survival, compared with remaining on dialysis or receiving a deceased donor kidney transplant. Although LDKT education within transplant centers for both potential recipients and living donors is very important, outreach and education to kidney patients in settings other than transplant centers and to the general public is also critical to increase access to this highly beneficial treatment. In June 2014, the American Society of Transplantation's Live Donor Community of Practice, with the support of 10 additional sponsors, convened a consensus conference to determine best practices in LDKT, including a workgroup focused on developing a set of recommendations for optimizing outreach and LDKT education outside of transplant centers. Members of this workgroup performed a structured literature review, conducted teleconference meetings, and met in person at the 2-day conference. Their efforts resulted in consensus around the following recommendations. First, preemptive transplantation should be promoted through increased LDKT education by primary care physicians and community nephrologists. Second, dialysis providers should be trained to educate their own patients about LDKT and deceased donor kidney transplantation. Third, partnerships between community organizations, organ procurement organizations, religious organizations, and transplant centers should be fostered to support transplantation. Fourth, use of technology should be improved or expanded to better educate kidney patients and their support networks. Fifth, LDKT education and outreach should be improved for kidney patients in rural areas. Finally, a consensus-driven, evidence-based public message about LDKT should be developed. Discussion of the effect and potential for implementation around each recommendation is featured, particularly regarding reducing racial and socioeconomic disparities in access to LDKT. To accomplish these recommendations, the entire community of professionals and organizations serving kidney patients must work collaboratively toward ensuring accurate, comprehensive, and up-to-date LDKT education for all patients, thereby reducing barriers to LDKT access and increasing LDKT rates., (Copyright © 2015 by the American Society of Nephrology.)

Background and Objectives: The Centers for Medicare & Medicaid Services (CMS) requires that dialysis centers inform new patients of their transplant options and document compliance using the CMS-2728 Medical Evidence Form (Form-2728). This study compared reports of transplant education for new dialysis patients reported to CMS with descriptions from transplant educators (predominantly dialysis nurses and social workers) of their centers' quantity of and specific educational practices. The goal was to determine what specific transplant education occurred and whether provision of transplant education was associated with center-level variation in transplant wait-listing rates., Design, Setting, Participants, & Measurements: Form-2728 data were drawn for 1558 incident dialysis patients at 170 centers in the Heartland Kidney Network (Iowa, Kansas, Missouri, and Nebraska) in 2009-2011; educators at these centers completed a survey describing their transplant educational practices. Educators' own survey responses were compared with Form-2728 reports for patients at each corresponding center. The association of quantity of transplant education practices used with wait-listing rates across dialysis centers was examined using multivariable negative binomial regression., Results: According to Form-2728, 77% of patients (n=1203) were informed of their transplant options within 45 days. Educators, who reported low levels of transplant knowledge themselves (six of 12 questions answered correctly), most commonly reported giving oral recommendations to begin transplant evaluation (988 informed patients educated, 81% of centers) and referrals to external transplant education programs (959 informed patients educated, 81% of centers). Only 18% reported having detailed discussions about transplant with their patients. Compared with others, centers that used more than three educational activities (incident rate ratio, 1.36; 95% confidence interval, 1.07 to 1.73) had higher transplant wait-listing rates., Conclusions: While most educators inform new patients that transplant is an option, dialysis centers with higher wait-listing rates use multiple transplant education strategies., (Copyright © 2015 by the American Society of Nephrology.)

Background: Compared to others, dialysis patients who are socioeconomically disadvantaged or Black are less likely to receive education about deceased donor kidney transplant (DDKT) and living donor kidney transplant (LDKT) before they reach transplant centers, often due to limited availability of transplant education within dialysis centers. Since these patients are often less knowledgeable or ready to pursue transplant, educational content must be simplified, made culturally sensitive, and presented gradually across multiple sessions to increase learning and honor where they are in their decision-making about transplant. The Explore Transplant at Home (ETH) program was developed to help patients learn more about DDKT and LDKT at home, with and without telephone conversations with an educator., Methods and Study Design: In this randomized controlled trial (RCT), 540 low-income Black and White dialysis patients with household incomes at or below 250 % of the federal poverty line, some of whom receive financial assistance from the Missouri Kidney Program, will be randomly assigned to one of three education conditions: (1) standard-of-care transplant education provided by the dialysis center, (2) patient-guided ETH (ETH-PG), and (3) health educator-guided ETH (ETH-EG). Patients in the standard-of-care condition will only receive education provided in their dialysis centers. Those in the two ETH conditions will receive four video and print modules delivered over an 8 month period by mail, with the option of receiving supplementary text messages weekly. In addition, patients in the ETH-EG condition will participate in multiple telephonic educational sessions with a health educator. Changes in transplant knowledge, decisional balance, self-efficacy, and informed decision making will be captured with surveys administered before and after the ETH education., Discussion: At the conclusion of this RCT, we will have determined whether an education program administered to socioeconomically disadvantaged dialysis patients, over several months directly in their homes, can help more individuals learn about the options of DDKT and LDKT. We also will be able to examine the efficacy of different educational delivery approaches to further understand whether the addition of a telephone educator is necessary for increasing transplant knowledge., Trial Registration: ClinicalTrials.gov, NCT02268682.

Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease (ESRD) in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose of this article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant.

While educational interventions to increase patient motivation to pursue living donor kidney transplant have shown success in increasing living donor kidney transplant rates, there are no validated, theoretically consistent measures of Stage of Change, a measure of readiness to pursue living donor kidney transplant; Decisional Balance, a weighted assessment of living donor kidney transplant's advantages/disadvantages; and Self-Efficacy, a measure of belief that patients can pursue living donor kidney transplant in difficult circumstances. This study developed and validated measures of these three constructs. In two independent samples of kidney patients (N 1 = 279 and N 2 = 204), results showed good psychometric properties and support for their use in the assessment of living donor kidney transplant interventions., (© The Author(s) 2013.)

Context: For adults with end-stage kidney disease, live donor kidney transplant (LDKT) has better outcomes than long-term dialysis and deceased donor kidney transplant. However, black patients receive LDKT at a much lower rate than adults of any other race or ethnicity., Objective: To examine the LDKT readiness stage of black patients on the transplant waiting list and its association with LDKT knowledge, concerns, and willingness., Design: Cross-sectional analysis of baseline data from a randomized controlled trial to improve knowledge and reduce concerns about LDKT.Patients and Setting-One hundred fifty-two black patients on the kidney transplant waiting list at a single transplant center in the northeastern United States., Main Outcome Measures: LDKT readiness stage, knowledge, concerns, and willingness to talk to others about living donation., Results: Sixty percent of patients were not considering or not yet ready to pursue LDKT, and only 11% had taken action to talk to family members or friends about the possibility of living kidney donation. Patients in later stages of LDKT readiness (ie, who had talked to others about donation or were preparing to do so) had significantly more knowledge (P<.001), fewer concerns (P=.002), and more willingness (P=.001) to talk to others about living donation than those in earlier readiness stages., Conclusions: The large percentage of black patients who are in the earlier stages of LDKT readiness may account for the low rate of LDKT in this patient population at our transplant center. Innovative and tailored LDKT educational strategies for black patients are needed to help reduce racial disparities in LDKT.

Background: Blacks receive live donor kidney transplant (LDKT) less often than patients of all other races. We evaluated the effectiveness of educational interventions in removing barriers to LDKT for blacks., Methods: Patients were randomized to three interventions in which health educator(s) delivered an intervention to (a) the patient and his/her guests in the patient's home (house calls [HC], n=54), (b) clusters of patients and their guests in the transplant center (group based [GB], n=49), and (c) the individual patient alone in the transplant center (individual counseling [IC], n=49)., Results: At the 2-year endpoint, 15% (n=8), 8% (n=4), and 6% (n=3) of HC, GB, and IC patients, respectively, received LDKT (P=0.30). Patients in the HC group were more likely than patients in the GB and IC groups to have at least one donor inquiry (82% vs. 61% vs. 47%, P=0.001) and evaluation (65% vs. 39% vs. 27%, P<0.001). Patients in the HC group also were more likely to have higher knowledge, fewer concerns, and higher willingness to talk to others about donation 6 weeks after intervention., Conclusions: These findings underscore the importance of including the patient's social network in LDKT education and the potential of the HC intervention to reduce racial disparity in LDKT rates.

Background: Because of the deceased donor organ shortage, more kidney patients are considering whether to receive kidneys from family and friends, a process called living donor kidney transplantation (LDKT). Although Blacks and Hispanics are 3.4 and 1.5 times more likely, respectively, to develop end stage renal disease (ESRD) than Whites, they are less likely to receive LDKTs. To address this disparity, a new randomized controlled trial (RCT) will assess whether Black, Hispanic, and White transplant patients' knowledge, readiness to pursue LDKT, and receipt of LDKTs can be increased when they participate in the Your Path to Transplant (YPT) computer-tailored intervention., Methods/design: Nine hundred Black, Hispanic, and White ESRD patients presenting for transplant evaluation at University of California, Los Angeles Kidney and Pancreas Transplant Program (UCLA-KPTP) will be randomly assigned to one of two education conditions, YPT or Usual Care Control Education (UC). As they undergo transplant evaluation, patients in the YPT condition will receive individually-tailored telephonic coaching sessions, feedback reports, video and print transplant education resources, and assistance with reducing any known socioeconomic barriers to LDKT. Patients receiving UC will only receive transplant education provided by UCLA-KPTP. Changes in transplant knowledge, readiness, pros and cons, and self-efficacy to pursue LDKT will be assessed prior to presenting at the transplant center (baseline), during transplant evaluation, and 4- and 8-months post-baseline, while completion of transplant evaluation and receipt of LDKTs will be assessed at 18-months post-baseline. The RCT will determine, compared to UC, whether Black, Hispanic, and White patients receiving YPT increase in their readiness to pursue LDKT and transplant knowledge, and become more likely to complete transplant medical evaluation and pursue LDKT. It will also examine how known patient, family, and healthcare system barriers to LDKT act alone and in combination with YPT to affect patients' transplant decision-making and behavior. Statistical analyses will be performed under an intent-to-treat approach., Discussion: At the conclusion of the study, we will have assessed the effectiveness of an innovative and cost-effective YPT intervention that could be utilized to tailor LDKT discussion and education based on the needs of individual patients of different races in many healthcare settings., Trial Registration: ClinicalTrials.gov, number NCT02181114.

Background: The best treatment option for end-stage renal disease is usually a transplant, preferably a live donor kidney transplant (LDKT). The most effective ways to educate kidney transplant candidates about the risks, benefits, and process of LDKT remain unknown., Methods/design: We report the protocol of the Enhancing Living Donor Kidney Transplant Education (ELITE) Study, a cluster randomized trial of an educational intervention to be implemented during initial transplant evaluation at a large, suburban U.S. transplant center. Five hundred potential transplant candidates are cluster randomized (by date of visit) to receive either: (1) standard-of-care ("usual") transplant education, or (2) intensive education that is based upon the Explore Transplant series of educational materials. Intensive transplant education includes viewing an educational video about LDKT, receiving print education, and meeting with a transplant educator. The primary outcome consists of knowledge of the benefits, risks, and process of LDKT, assessed one week after the transplant evaluation. As a secondary outcome, knowledge and understanding of LDKT are assessed 3 months after the evaluation. Additional secondary outcomes, assessed one week and 3 months after the evaluation, include readiness, self-efficacy, and decisional balance regarding transplant and LDKT, with differences assessed by race. Although the unit of randomization is the date of the transplant evaluation visit, the unit of analysis will be the individual potential transplant candidate., Discussion: The ELITE Study will help to determine how education in a transplant center can best be designed to help Black and non-Black patients learn about the option of LDKT., Trial Registration: Clinicaltrials.gov number NCT01261910.

Background and Objectives: To reduce racial disparities in transplant, modifiable patient characteristics associated with completion of transplant evaluation and receipt of living donor kidney transplant must be identified., Design, Setting, Participants, & Measurements: From 2004 to 2007, 695 black and white patients were surveyed about 15 less-modifiable and 10 more-modifiable characteristics at evaluation onset; whether they had completed evaluation within 1 year and received living donor kidney transplants by 2010 was determined. Logistic regression and competing risks time-to-event analysis were conducted to determine the variables that predicted evaluation completion and living donor kidney transplant receipt., Results: Not adjusting for covariates, blacks were less likely than whites to complete evaluation (26.2% versus 51.8%, P<0.001) and receive living donor kidney transplants (8.7% versus 21.9%, P<0.001). More-modifiable variables associated with completing evaluation included more willing to be on the waiting list (odds ratio=3.4, 95% confidence interval=2.1, 5.7), more willing to pursue living donor kidney transplant (odds ratio=2.7, 95% confidence interval=1.8, 4.0), having access to more transplant education resources (odds ratio=2.2, 95% confidence interval=1.5, 3.2), and having greater transplant knowledge (odds ratio=1.8, 95% confidence interval=1.2, 2.7). Patients who started evaluation more willing to pursue living donor kidney transplant (hazard ratio=4.3, 95% confidence interval=2.7, 6.8) and having greater transplant knowledge (hazard ratio=1.2, 95% confidence interval=1.1, 1.3) were more likely to receive living donor kidney transplants., Conclusions: Because patients who began transplant evaluation with greater transplant knowledge and motivation were ultimately more successful at receiving transplants years later, behavioral and educational interventions may be very successful strategies to reduce or overcome racial disparities in transplant.

We show that HIV-infected waitlisted patients (n=33) had significantly lower knowledge (P<0.001), more concerns (P=0.01), and lower willingness to pursue live-donor kidney transplantation (LDKT; P=0.02) than matched noninfected patients. The majority (78%) of patients felt that their HIV status reduced their chance of LDKT. Although limited to a single center and a small sample, our data suggest that HIV-infected patients who are waitlisted for kidney transplantation may need more education about the potential benefits of LDKT and may benefit from patient-centered decision support to facilitate a risk-benefit assessment consistent with their preferences and values.

Background: Although U.S. transplantation programs must submit living-donor follow-up data through 2 years after donation, the submissions have high rates of incomplete or missing data. It is important to understand barriers programs face in collecting follow-up information., Methods: Two hundred thirty-one programs performing living kidney donor (LKD) and/or living liver donor (LLD) transplantation were contacted to complete a survey about program attitudes concerning donor follow-up, follow-up practices, and barriers to success., Results: Respondents representing 147 programs (111 with only LKD and 36 with both LKD and LLD) participated. Sixty-eight percent of LKD and 83% of LLD respondents said that achieving follow-up was a high priority. The majority agreed that donors should be followed at least 2 years (61% LKD programs and 73% LLD programs), and sizeable percentages (31% LKD and 37% LLD) endorsed 5 years of follow-up. However, approximately 40% of programs lost contact with more than 75% of their donors by 2 years after donation. Follow-up barriers included donors not wanting to return to the program (87%), out-of-date contact information (73%), and lack of program (54%) or donor (49%) reimbursement for follow-up costs. Whereas 92% of LKD and 96% of LLD programs inform potential donors about follow-up requirements, fewer (67% LKD and 78% LLD) develop plans with donors to achieve follow-up., Conclusions: Most respondents agree that donor follow-up is important, but they report difficulty achieving it. Improvements may occur if programs work with donors to develop plans to achieve follow-up, programmatic standards are set for completeness in follow-up data reporting, and sufficient staff resources are available to ensure ongoing post-donation contact.

Background: Limited data exist on correlates of psychological outcomes after kidney donation., Methods: We used a database integrating Organ Procurement and Transplantation Network registrations for 4650 living kidney donors from 1987 to 2007 with administrative data of a U.S. private health insurer (2000-2007 claims) to identify depression diagnoses among prior living donors. The burden and demographic correlates of depression after enrollment in the insurance plan were estimated by Cox regression. Graft failure and death of the donor's recipient were examined as time-varying exposures., Results: After start of insurance benefits, the cumulative frequency of depression diagnosis was 4.2% at 1 year and 11.5% at 5 years, and depression among donors was less common than among age- and gender-matched general insurance beneficiaries (rate ratio, 0.70; 95% confidence intervals [CI], 0.60-0.81). Demographic and clinical correlates of increased likelihood of depression diagnoses among the prior donors included female gender, white race, and some perioperative complications. After adjustment for donor demographic factors, recipient death (adjusted hazard ratio (aHR), 2.23; 95% CI, 1.11-4.48) and death-censored graft failure (aHR, 3.30; 95% CI, 1.49-7.34) were associated with two to three times the relative risk of subsequent depression diagnosis among nonspousal unrelated donors. There were trends toward increased depression diagnoses after recipient death and graft failure among spousal donors but no evidence of associations of these recipient events with the likelihood of depression diagnosis among related donors., Conclusions: Recipient death and graft loss predict increased depression risk among unrelated living donors in this privately insured sample. Informed consent and postdonation care should consider the potential impact of recipient outcomes on the psychological health of the donor.

Despite a substantially lower rate of live donor kidney transplantation among Black Americans compared to White Americans, there are few systematic efforts to reduce this racial disparity. This paper describes the rationale and design of a randomized controlled trial evaluating the comparative effectiveness of three different educational interventions for increasing live donor kidney transplantation in Black Americans. This trial is a single-site, urn-randomized controlled trial with a planned enrollment of 180 Black Americans awaiting kidney transplantation. Patients are randomized to receive transplant education in one of three education conditions: through group education at their homes (e.g., House Calls), or through group (Group-Based) or individual education (Individual Counseling) in the transplant center. The primary outcome of the trial is the occurrence of a live donor kidney transplant, with secondary outcomes including living donor inquiries and evaluations as well as changes in patient live donor kidney transplantation readiness, willingness, knowledge, and concerns. Sex, age, dialysis status, and quality of life are evaluated as moderating factors. Findings from this clinical trial have the potential to inform strategies for reducing racial disparities in live donor kidney transplantation. Similar trials have been developed recently to broaden the evaluation of House Calls as an innovative disparity-reducing intervention in kidney transplantation., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Background: Live kidney donors are advised to follow up regularly with healthcare providers to monitor kidney function and to diagnose and treat relevant comorbidities. We sought to determine the frequency and correlates of follow-up care among live kidney donors., Methods: We sent a mailed questionnaire to 606 live kidney donors from a single center who were at least three yr post-nephrectomy., Results: We received usable responses from 276 (45.5%), at a median of 6.2 yr post-donation. Compared with non-responders, responding donors were more likely to be older (p < 0.001), female (p = 0.002), white (p < 0.001), and married to the recipient (p < 0.001). In the prior year, 87.7% of respondents reported seeing a physician or other healthcare professional, and 79.0% had seen a "general doctor" such as their primary care provider. In univariable analyses of live kidney donors who responded to our survey, lack of medical follow-up in the past year was associated with younger age, current lack of health insurance, and infrequent contact with the transplant recipient., Conclusions: Most responding live kidney donors had seen a healthcare provider within the past year. To improve donors' follow-up, transplant centers can consider targeting donors who are younger or lack health insurance., (© 2012 John Wiley & Sons A/S.)

In order to sustain life, patients whose kidneys fail must receive dialysis or obtain a transplant. This study reports on the development and validation of measures of Stage of Change, Decisional Balance and Self-efficacy based on the Transtheoretical Model (TTM) to assess patients' readiness to receive a deceased donor transplant. We surveyed 293 transplant-eligible kidney patients about their deceased donation readiness. Exploratory and confirmatory analyses for all measures demonstrated factor structures similar to previous application of the TTM to other health behaviors, excellent model fit and good internal and external validity. These brief, reliable instruments with good psychometric properties can guide the development of improved, individually-tailored transplant education for patients.